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Living With Alzheimer's, Looking for a Home

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Their plea pursues me. "I wanna go home. Can you help me?" They try to get out. They look for a door, an elevator to open. They wander out, and sometimes get lost. They are searching for a home that no longer exists. They are the 5.4 million with Alzheimer's* whose disabled mind has robbed them of the familiarity that once felt safe. In their own homes, and even more so in the institutions where they are often placed, those men and women dwell in a permanent state of alienation. Changes in the ability to remember and to make sense of their surroundings, combined with powerlessness over their destiny, makes them at the mercy of those in charge of their care. The same way we would not think of imprisoning our children in closeted spaces, it is our responsibility to provide those (mostly) elders with living conditions where they can find happiness, regardless of the condition of their brain. This is a global problem that requires that we put our heads and hearts together to come up with actual solutions, not just concepts. We can start by posing the question of what is home. I did an informal survey and was struck by the universality of the answers. More than a physical space, home is an emotional experience that transcends culture, gender, age, and race.

Home means satisfying the following seven areas of needs for the person with dementia:

Safety
Home is a refuge from the outside world, a protected place where we can let our guard down. Once inside, we need not worry about watching our stuff, or worrying about our safety. We do not let strangers in unless we want to.

Familiarity
At home, we know what to expect. Same smells, lived-in furniture, people, sounds, daily routines -- these provide us with the reassurance of predictability, and the continuity to thread our sense of self.

Comfort
Old slippers, easy chair, temperature just right, warm PJs, cozy corner by the fireplace -- these are some of the ingredients of comfort to be found in our home.

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Freedom
Within the walls of home, we can do whatever we want, whenever we want. We can decide to put on some music or not. We can go to the fridge and fix ourselves a snack anytime. We can set our own rules. We can be ourselves.

Closeness
Home is a place for close bonds with a few loved ones. Spouses, children, friends, relatives, neighbors, pets, satisfy the relational beings that we are. We don't feel alone.

Identity
Only at home can we indulge our unique preferences, our favorite tea, our music, our comfort food, our preferred TV show... Folks at home know what we like. Home is personal.

Domesticity
Closely identified with home are the chores that we get to participate in, whether actively or as a witness. Grocery shopping, planning meals, cooking, doing laundry, cleaning house, taking out garbage, tending our gardens...

We can take each of those seven characteristics of "home" and use them to assess living environments for the person with dementia, remembering that dementia alters the person's experience in such a way that significant accommodations will need to be made to recreate the home experience they yearn for.

In a private home, this requires that family caregivers make changes in the physical environment as well as in the ways in which they relate to the person. The house needs to be modified to keep the person safe in a non-shaming way: an electric stove instead of the old gas one, subtle reminders throughout the house, de-cluttering, simplified routines, better lighting, not too many sounds at once, enough stimulation but not too much. To preserve the person's sense of freedom, caregivers have to pay special attention to involving him or her in as many decisions as possible. That way, the person feels that they have a say and have some control still in their own home. This is not easy for the family caregiver, and requires practice. Choices need to be simple. They also need to be offered more frequently. As the dementia progresses, the challenge also arises of how to keep the person engaged. Old interests may no longer hold or be possible. The caregiver then needs to work within the limited repertory of remaining possibilities. Domestic routines remain an opportunity for engagement not to be overlooked. Preparing meals, setting the table, folding laundry, and pulling weeds are just some examples. And there is always music, a door into the brain that never closes, even in the most advanced stages of dementia. These are just a few of the strategies that can help the family caregiver restore the feeling of "home" for their loved one. This is an evolving process, requiring ongoing adjustments. The only constant is the need for the person to have those seven areas of their emotional experience met.

In assisted living and memory care communities, elder care executives are faced with multiple challenges including regulatory requirements, safety considerations, demands from a complex milieu, cost concerns, shift changes, old institutional habits, and impersonal buildings -- all impediments to creating a home experience. Overcoming those hurdles means taking a critical look at the status quo and questioning every aspect of the functioning of the community, down to the most minute details. For instance, breaking down the institutional separation between "us" the residents and "them" the workers may involve eliminating outward manifestations such as uniforms, differentiating name tags, and dangling keys. Meals can become an occasion for staff and residents to commune together around the dining room table. Part of the food preparation can be done in a kitchen right next to the dining area, and residents can get included. Loudspeaker announcements can be replaced by subtle text messages. Activities can be rethought, away from the current group entertainment model to greater personalization, and involvement of residents in activities that make them feel needed and useful. Mailboxes may be added to residents' private living spaces, and personal "mail" can be created and delivered each day to encourage a sense of recognition and home normalcy. The list could go on. In each case, the goal is the same: to enhance each resident's feeling of being at home based on the seven factors of safety, familiarity, comfort, freedom, closeness, identity, and domesticity.

Home is in the heart.

* Seven million, if we include other dementia types besides Alzheimer's

For more by Marguerite Manteau-Rao, click here.

For more on caregiving, click here.

For more on Alzheimer's, click here.

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